Eight-month-old Nella Evangeline Grutter suffers from a genetic disorder for which there is no known cure.
Now her family has learned she missed out on an experimental treatment by three weeks.
"We're asking even if she doesn't qualify, if she can still get the drug, just out of compassion, and see if it will help her,"Nella's mom, Grace Grutter, said.
It is heartbreaking meeting baby Nella and her mom who cherishes every moment she can, not knowing how much time they have together. But the family is not giving up and neither are thousands of people sending out Prayers for Nella on a Facebook page.
"She is the happiest baby, she can't move very much anymore, but she doesn't let that get her," Grutter said.
Baby Nella's smile brightens up the whole room. Her mom says one day Nella won't be able to smile anymore.
"She's just so happy and has a light and she just has a way of letting me know when I get scared or when I get sad, she just has a way of letting us know it's all going to be OK and she's OK," Grutter said. "We don't take a single moment with her for granted."
"It's the most devastating thing in world to have this beautiful baby that you've prayed for your entire life and you love more than anything to be told that her body is going to fail her," Grutter said.
SMA is a genetic disease. Babies like Nella are born healthy but lose muscle and strength slowly.
"Nella needs 24-hour care. She is on a ventilator, she needs frequent suctioning, feeding tubes," her mom said.
It's been five months since doctors told the Grutters that Nella only had weeks or months to live.
"We believe with everything we have that those prayers are keeping her strong," Grutter said.
Support from thousands on Facebook has helped the family get through the diagnosis.
They've been hit with even more tough news now as they learned Nella is just three weeks too old to take part in a gene trial that could cure her of SMA. Babies in the out-of-state gene trial have to be under 9 months old, and when the trial starts, Nella will already be 9 months old.
"In November we heard about this gene therapy drug that has cured SMA in mice models," her mother said. "This was kind of our last hope. We're asking even if she doesn't qualify, if she can still get the drug, just out of compassion and see if it will help her."
It was because of the Prayers for Nella Facebook page that Grutter learned about the compassionate use exemption and she is still looking into it.
It would allow access to FDA investigational medicines on a case-by-case basis of those patients who have the most to gain and the least to lose.
Bracelets are also being sold to support SMA research and the Grutter family. Click here for more information.
Copyright 2014 KCTV (Meredith Corp.) All rights reserved.
Tuesday, September 2 2014 8:02 PM EDT2014-09-03 00:02:03 GMT
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